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Saturday, February 26, 2011

When Scarlett was first diagnosed, one of our first questions was, "How much does this cost?" We figure that, on the scale of medical expenses, infant brain surgery must be about as expensive as you can get. Add on the long-term care and oncology services, as well as constant prescriptions and even the gas and bridge toll to get to the hospital, and we began to panic about how we would ever afford this.

We learned quickly that NO ONE could ever afford it, and the medical establishments know this. The prices are for the insurance company. Yes, we have insurance, good insurance, and it covers nearly everything so far. We have reasonable co-pays for hospital admissions, office visits and prescriptions, though they add up fast. In addition, we have learned that there are many charitable foundations that are designed to help families like ours to cover some of the living expenses that arise during treatment. For instance, we pay $5 in bridge toll every time we take Scarlett to Palo Alto for lab work, appointments or chemo. We don't pay bridge toll to Oakland, but we do pay to park; $7.50 every day of every visit (that added up for the 27 days we were there in January). Plus, we have to eat.

Even though we don't have to pay the full prices, we still receive all the "explanations of benefits" that tell us just how much we are being saved by having insurance. These documents detail the cost of each procedure, supply and order that was done for Scarlett. Having never had much experience with medical services, we had no idea how much the "necessities" cost. A few of my favorites so far:

"Semi-private room" for 6 days: $125,095.90

Her first brain and spine MRI: $23,048.00 (she has had at least 2 more since then, and will have them every few months)

Biopsy surgery (which took less that two hours from start to finish): $39,288 for the surgery; $30,468 for the operating room; $5374 for the surgical supplies; total $75,130.00

One prescription: $2989.00

We find no purpose in panicking over the costs; we will find a way to pay for whatever she needs, and will never deny her care because of the cost, whether it is covered or not. However, we laugh every time we see these numbers because it is ridiculous to expect normal people to be able to pay for this. Even if we lose our insurance coverage due to me not working (very likely in the near future), she would be covered by various state insurance programs.

We are keeping a running total of the costs just to see what it comes to in the end. This is not what we are being charged, but some insurance company somewhere is paying it. It's another piece of her story, another part of the puzzle that is our life.

Thank you to Leslie and Chris Feyling for lasagna, and for taking a load of baby gear off our hands! Sorry Les didn't let you have any brownies, Chris!

Scarlett is making great progress toward holding up her head! We bought her a BebePod chair to continue practicing being upright. It is very hard for her to do tummy time because her port is sore (a rounded nub sticks out under the skin of her chest). She is also frustrated by being placed on her right side most of the time she is laying down; her shunt sticks out on her head and she can't lay on it until it is more healed. Despite her frustration, she has been in a generally good mood and isn't too fussy. Hopefully, more physical therapy in the near future will help with this.

Thursday, February 24, 2011

I am working on adding some elements to the blog as I learn more. Check out the new "Scarlett's Story" tab for the short version of the whole story so far and some new pictures.

THANK YOU to Carrie, Ally and Ava Irwin who brought us delicious sushi for dinner tonight. We gobbled it up as if it might swim away! Ally was in my kindergarten class a few years ago; I loved hearing her tell me about school and the other kids from our class! Scarlett was awake and very alert when they were here, and even tried to give a little smile before they left!

We heard back from oncology today; we go for labs on Monday and are scheduled to be admitted for chemo Thursday. It's hard to rev up for chemo again, but the good news is that we have a whole week at home! I think Scarlett had this planned all along, knowing momma needed a break!

Wednesday, February 23, 2011

The shunt is healing well...so well, that we were sent home today! She had another quick MRI to check that the fluid was back to normal (or whatever normal is for her) and she hasn't needed Morphine all day, so she was cleared to go home.

Chris has tomorrow off, so we will be resting and hopefully staying in bed late!

Tuesday, February 22, 2011

It has been a very long, very tiring two days. Bottom line: Scarlett now has a VP shunt.

We were discharged from Stanford Saturday morning. Sunday we spent the day visiting family. I'm so glad we go out a little while we could.

Yesterday we were due back at Stanford for blood work. It took 4 hours to get cleared to leave, as we got trapped waiting for Scarlett to provide a urine sample. First of all, she isn't eating much, so to get any urine, I had to get her to eat in spite of her nausea. Then, I had to actually collect a clean sample of the resulting urine. This is hard enough for an adult (I know - when you are pregnant, they make you give a sample at every appointment. Details aside, it is hard to aim for the cup the further into pregnancy you get...); but to collect a urine sample from a baby is particularly challenging. We use cotton balls in her diaper that are squeezed into a specimen cup. Unfortunately, to catch the cotton before it gets pooped on is harder than one might expect. It requires constant vigilance. But, we eventually did get it and Scarlett checked out well, with her blood counts showing she was ready for chemo.

We had scheduled a quick MRI in Oakland before being admitted for chemo at Stanford, just to check her progress. So, this morning, I planned to wake up early to get us clean, dressed, fed and to Oakland amid the morning commute traffic. The little lady had other plans, as usual, so she woke up an hour before my alarm went off to nurse. So much for the alarm!

The MRI was delayed and took a while to even happen. We then waited in the neurosurgery clinic as her surgeon, who was in another surgery, checked the scan and decided that there had been a change, and it was shunt time. We knew he had anticipated it, but we had hoped to hold out a while longer....but of course Scarlett always has her own plans! So, when they decided to sneak a shunt placement between two other neurosurgeries today, I wasn't too surprised.

The surgery was short and easy. She was awake and alert before we even got to the recovery room. The shunt is placed on the left occipital (rear) part of her head, and leads to a long tube that drains excess cerebral-spinal fluid from her brain to her abdomen where it can be reabsorbed. As far as I know, she will always have the shunt. It will extend as she grows and can be adjusted as needed. It definitely adds a challenge for her, but shouldn't hold her back from doing what she wants when she is older.

The most difficult element of this is that, because she still has symptoms of RSV (a runny nose that makes her sneeze), we are on contact precautions, which means gowns and masks for everyone, including us. This means I have to sleep on the fold-out chair with a paper mask on in a fully-lit PICU. I tried to say I didn't need a mask because I had been exposed to her for two weeks, but "it's the rules." No further discussion for now; I'll try with new doctors tomorrow morning.

We are hoping she is ready for chemo again in a week or two, after a few days in the hospital to recover from the surgery. Good news is that the doctors saw no signs of major tumor growth, so we are still in good shape there. A new resident in the ICU, who didn't see us before, again called her MRI images "impressive"... I think this is a strange way that they try to communicate with us, as though we should be proud of her for having such a massive tumor. I know they don't mean it, but it is surreal to talk about it that way.

It's just another bump in the road.

P.S. - Thank you to Beth Stutzman for the crab quiche! It's taunting us in the freezer until we can eat at home again. Someone asked how to get on the meal schedule; e-mail sandjgarrett@comcast.net.

Sunday, February 20, 2011

I decided that I would adjust our weekly pictures to begin showing off some of the wonderful and thoughtful gifts we have received. First, last week's picture that just got uploaded...

She fell asleep admiring herself in the mirror. Physical therapy has been helping Scarlett strengthen her neck muscles to tolerate side and stomach laying.

18 weeks. Thank you for the dress, hat and quilt!

She is refusing to look at the camera (as usual). This dress is so sweet and fits perfectly right now. The hat was given to us at the concert a few weeks ago. The quilt just came last week and is soft flannel that she will love rolling around on.

We have gotten so many wonderful gifts. In the beginning, I tried so hard to write thank you notes, but now it has gotten away from me. Please know that we really, truly appreciate everything and save everything for Scarlett to see when she grows up. We have every card, note and gift that has come our way. I will try to include things in pictures as much as possible.

I'd also like to say a big THANK YOU to Sylvia Garrett, who has begun coordinating some meal deliveries for us when we are home. We are so grateful to have some goodies ready to eat. Thank you to the Resh family for the first delicious meal - chicken and cheese enchiladas, beans, rice, salad, chips and especially the brownies!!! SO much better than hospital food!

Saturday, February 19, 2011

10 days later, we are finally home. Scarlett is doing well, despite a little nausea, very sensitive, irritated skin and some mouth sores. These are not unexpected, and she is tolerating it all well. We are resting and gearing up for another in-patient week beginning Tuesday. Off to wash the RSV out of all our linens...

Thursday, February 17, 2011

Scarlett turned 4 months old yesterday! No fanfare or celebration, but another milestone that we were told we might not reach just a few weeks ago. She is still *almost* 12 pounds, still in 0-3 cloths and size 1 diapers, but is starting to turn and hold up her head again, grabs her Wubbanub pacifier when she sees it, sucks on her fist and likes to feel momma's face and hair. She enjoys her glowing seahorse toy at night and watching TV when she gets a peek.

8 days later, and we're still, still, STILL in the hospital tonight, waiting for the chemo to clear her system. She needs to score less than 0.1 to be discharged...today, she was 0.16. Close, but no cigar. So, we're getting cozy for (hopefully) one last night for this week. She has still had no bad reactions, and is eating better and better. The RSV seems to have passed, other than some residual snottiness in her nose, which makes her have the cutest little sneezes, always in pairs. She's been so strong, and is acquiring quite the fan club among the nurses. We're so proud of her!

There's not much else to say about it all right now. We go for yet another MRI soon to check yet again about the shunt. More later on that, and on the huge number of medications and procedures we are learning we will need at home from now on. Thanks for all the well wishes for this course of chemo - we needed all the positive energy!

Tuesday, February 15, 2011

I am breathing easier now. The first dose of chemo is over. It was run over 24 hours, with the first hour a high dose system shock, then 23 hours of continued IV infusion. Now, we have to wait a few days until the levels of drugs in her urine measure almost undetectable. Then we go home for a few days, and are back in-patient next week for the next drugs.

She has not had any negative side effects yet. She has been slightly sleepier and less interested in eating than usual, but overall, it has been easy for her. The fluids that are flushing the chemo from her system make her have many, many wet diapers, which we must wear gloves to change to protect ourselves from the chemo.

I was so scared, so anxious for what it would be like the first time, as the chemo hit her system. As they connected the neon yellow liquid to her IV, I just stared at the toxic chemicals that we were willingly pumping into her little body. In my head, I know that the drugs are necessary to make her better. But my heart wants to grab her and run far away from these horrible chemicals that are made to make her sick and well at the same time.

I did not know much about chemotherapy before we began dealing with it personally. Chemotherapy is drugs that are used to kill cancerous cells in the blood. Unfortunately, it doesn't only kill cancerous cells, but healthy ones as well. This is what causes the familiar side effects: nausea, hair loss, and most critically, weak immune system. My basic understanding is that chemotherapy drugs kill off those cells that reproduce quickly, like the blood, hair, digestive system and, of course, cancer. Damaging the cells makes the stomach upset and causes mouth sores and diaper rash; hair falls out (which takes longer); and the blood has trouble fighting off infection.

Blood is made of three basic parts: red cells, plasma and white cells. When the chemo starts to damage the blood, the red cells and plasma can be replaced by transfusion, but white cells cannot. Each body has personalized white cells that fight off infection or other invasive cells to that body. If you were to transfuse white cells from one person to another, the recipient's body would kill the new white cells because they are foreign. Normally, this function is used to kill viruses and infections, so when the white cells are low, the body is not able to fight off infections. Minor infections become our biggest enemy, as they can have devastating effects on a weak immune system. Luckily, white cells come back over time, so once the blood shows adequate white blood cell counts, patients are able to be around other people and lead a more normal life.

We are preparing for what this will be like for us. Luckily, Scarlett won't experience too much of a difference in her life; she won't miss school or friends when her counts are low. For Chris and I, it is more intrusive, but I think we will get used to it as we go. I can only hope that she continues to handle the chemo as well as she did this time and that we can continue to push forward.

Sunday, February 13, 2011

Tonight, Scarlett has her third Ribovarin tent treatment. Since the shock of the first night, we have learned a lot about the treatment. It is a liquid that is aerialized into the tent for her to inhale. It works by altering the DNA of the virus so that it can no longer replicate, thus shortening the time it takes for her body to recover. It is a huge ordeal that is very rarely done anymore, but because there is a critical need to get her on chemo as soon as possible, the infectious disease specialists agreed that Scarlett was a candidate.

The danger is mainly to me and any other child-bearing-aged woman. The medication can cause problems for developing fetuses, and can those effects can last as long as 6 months. Now that I have repeatedly reassured them that I am not nor do I intend to be pregnant any time soon, I am cleared to be in the room again (last night, they had me go out while Chris stayed in for the treatment). It is a very in-depth process for her and for us: She is given a sedative to help her sleep through the 4-6 hours of treatment; we are in a negative pressure isolation room to prevent any leaks of medication into the hospital ventilation; after the treatment each night, we must clear the room of all linens (including me changing clothes), wipe down all surfaces and bathe Scarlett. Since we start treatment at about 9pm, the clean up happens around 2am. Not a restful situation in the least.

However, it seems to be working: She has not had a fever in more than 24 hours. Her chest sounds clear and she is much less congested. They are planning on moving forward with Day 1 of chemo tomorrow; it is the last day to have her entered in the study that we would like to participate in (31 days after her last surgery).

Tomorrow is Valentine's Day. It marks one year since I took the tell-tale pregnancy test. Last year, our Valentine's Day was celebrated in shock, not quite sure how to handle the idea of a baby on the way. This year, it will mark the start of another life-changing phase of our family's life: chemotherapy.

Friday, February 11, 2011

Scarlett officially has RSV. For those without little kids, RSV is a very common, very prolific but somewhat serious respiratory infection that is rampant among small kids. From what I have seen, about two-thirds of babies get it in the first year, and 20% of those are hospitalized for it. We saw many RSV babies in the PICU before this, but never like this:

That is my poor baby inside of a plastic tent, inside a second plastic tent, receiving a breathing treatment that is supposedly going to help hurry her RSV recovery. She is in the tents for 6 hours. I cannot take her out or get to her for 6 hours unless it is an emergency. She is currently crying and kicking because she lost the pacifier, but that's not an emergency. I also have to wear a mask while the treatment is being given, and we will have to change all the linens in the room when it is done, including my clothes.

The goal is to have her ready for chemo on Monday; the normal course of RSV treatment is about a week, but they are trying to push it to three days. We need to get her as healthy as possible before we start chemo, while not waiting too long for the tumor to start growing back. It's a losing battle that I have just had to succumb to.

Thursday, February 10, 2011

Well, it seems Scarlett has different plans for herself. Long story short: her cold is not a cold. It is likely some kind of viral infection. RSV and Pertussis (Whooping Cough) swabs are in the lab. No chemo until this is sorted out.

After a long night of coughing and increasing fevers, we brought her to the hospital this morning. They were not happy with her decline since Tuesday's "it's just a cold" appointment. They have done blood draws, nasal swabs, and another chest x-ray. The cultures take 24 hours, so we don't know yet what it is, but they are pretty sure it's RSV (even though previous tests said it wasn't). So, we are admitted into oncology isolation for monitoring and antibiotics. This means that every nurse or doctor coming in must wear a mask and gown, and we have to be extra careful washing in and out. I am glad to be in the hospital rather than at home; just like any new mom, having a sick baby makes me nervous and I am not sure what to do. I am so used to having nurses and doctors when she is not feeling well, as well as the right medications and equipment on hand. We have the marvelous suction machine to suck the gunk out of her sinuses, nurses to ask, plus I don't have to do the laundry every time she throws up.

We hope to start the chemo this weekend, once the antibiotics have had a chance to take effect. We're getting a chance to adjust to the new oncology wing, learning where everything is and who does what. She's miserable, but at least she is getting what she needs. Hopefully we get what we need: a little sleep.

Tuesday, February 8, 2011

The cough is just a cold. It sounds bad to me, but none of the doctors are worried about it. They plan to go forward with chemo starting Thursday. The cough is still bad, but it's not in her chest, it's not RSV, and it's normal. Luckily, the doctors are very understanding that this is our first baby, and she has never been sick (like most "normal" babies), so this is all new to me on top of the cancer. I have license to worry more than others.

The swollen fontanel was a false alarm. I learned today how exactly to check it: she must be upright and calm, and NOT wrapped in a baby carrier that compresses her body. Anything that raises her blood pressure or changes the displacement of fluid in her head can affect the fontanel, and that is exactly what was happening. So, no shunt. Again. Whew.

She passed her hearing test with flying colors. Both ears tested well. Baby ears are tested for resonance from tones played to the ear drum. The feedback is measured to determine if the ear structures are functioning properly. We have to check her hearing frequently because one of the chemo drugs is "ototoxic", or is likely to damage hearing. I have a feeling it is only going to get harder as she gets older; today she slept through the whole process, but I doubt that will be the case for much longer.

She also had her first port blood draw. It was so much easier than I had anticipated. Because the port is completely under the skin, it is easy to access and less likely to be infected. We use a lidocaine cream one hour before access is needed, cover it with Press and Seal wrap, and it is ready to be painlessly drawn from. She didn't even flinch when they stuck the needle in.

So after a long day of appointments, she is home, coughing and sleeping. I am taking a bath to relax after all the running around. Tomorrow we pack. Thursday, chemo.

Monday, February 7, 2011

Scarlett hasn't been feeling too well since her port placement on Friday. I haven't had my hands free to type much all weekend. Now, I finally found a way to hold her in the Moby Wrap that she will tolerate, so I can type for a minute.

The procedure Friday was quick and easy, as far as surgeries go. It took a long time for them to get started, but then it was all over in a few hours, and we were home in time for dinner. The port doesn't seem to bother Scarlett, though I think her chest is a little sore. She is so small that it sticks out pretty far, but as she grows it will be less and less obtrusive.

She has a cough that sometimes causes her to choke. It could be a result of the anesthesia from Friday, or it could be a cold. It has me on edge all day and night as I try to keep her comfortable. I am waiting to hear back from the doctors about what to do...if she is sick, I don't think we will be able to start chemo this week, and that is a problem. Her fontanel is also a bit swollen, which means there is fluid accumulation in her brain. They will check this all tomorrow, but it could mean a shunt is in the near future...or not. I don't know.

Cosmo

Good news, though - we were finally able to bring our dog home. He has been staying with my parents since Scarlett was first hospitalized. He is very happy to be home, and we are happy to have him (though I am not enjoying the game of taking him outside to do his business with no results...) Cosmo is a Cocker Spaniel - Poodle mix (otherwise known as a Cockapoo) that we rescued from a shelter about a year and half ago. He is about 2 years old now and weighs about 15 pounds. He knows a few tricks and is usually well-behaved, though very excitable. He's also very snuggly. While we would never have planned to have a young dog and a baby at the same time in our tiny house, he's fun to have around.

I'm tentatively packing in case we end up in the hospital sooner than we planned. If not, we go tomorrow for a hearing test and blood draw, then she will be admitted Thursday for her first round of chemotherapy.

Thursday, February 3, 2011

We have been busy. Appointments at both hospitals kept us driving around most of the week. However, we got to visit with my first grade class on the 100th day of school, one of my favorite days. The kids were counting their 100 snack and making necklaces with 100 fruit loops...awesome!

Today, we saw the neurosurgeon and had yet another MRI. Still no fluid accumulation, so no shunt! Yea! She does seem to have a blind spot in her right field of vision, which causes her to prefer the left. This may resolve itself, but we just have to wait. Otherwise, they felt she looks great and they were all pleased to see how much she has grown since she was discharged - she has gained more than pound, and now weighs 11.5 pounds!

Wednesday's appointment was with Neuro-oncology. They feel like Scarlett is doing great and we all agreed it is time to move forward with chemotherapy. We get asked a lot why Scarlett needs chemo if the tumor has been removed. Tumors start from one damaged cell. That one cell copies itself over and over very quickly, drawing nutrients from the surrounding healthy tissue, until there is a mass of damaged cells that creates a large lump. The damaged cells can also travel through the blood (or, as with Scarlett's type of tumor, the spinal fluid) and begin growing in other places. Tumors that grow like this are malignant, or cancerous. Scarlett's tumor is one that will only grow in the brain; it is very likely to regrow into her brain, but can't go outside of the central nervous system (brain and spine). Because it is such an aggressive type of tumor that is very likely to grow, we need to use chemotherapy to kill the malignant cells before they regrow or spread.

Chemotherapy will begin next week. We have decided to have her receive treatment through a study developed by St. Jude Children's Hospital. As long as she handles it well, she will stay in the study. If the doctors feel she would be better off with a different treatment, they will do that. Being in a study is good because it is a set procedure that has safety precautions built in, and others are having good results with it. This particular study has been running for a few years, and is being done at Stanford as well, so we don't have to go to the St. Jude campus in Tennessee.

There are a few steps we need to complete before she begins treatment. First, she will have a port catheter placed. This is a long term IV that allows the doctors to give medicines and draw blood without poking Scarlett's tiny arms or legs. The surgeon showed us a sample; it looks like a button with a long tube. The "button" will be placed under the skin of her chest, with the tube leading through a vein toward her heart. This gets the medicines pumping through her system as quickly as possible. This type of access port can stay in for years; she can still bathe, swim and play and it is much less likely to get infected.

She will also have a lumbar puncture to draw some spinal fluid from her lower spine (this is precautionary - they do not expect to find any malignant cells there, but it is required for the study.) They will check her hearing, as one of the chemo drugs has been shown to affect hearing (they told us that if they see any hearing loss, they will pull her off the study and alter the plan).

Finally, we will be admitted to the hospital for her first round of chemo next Wednesday or Thursday. This is the first of many treatments which will last about a year. We're nervous about how Scarlett will react to chemo, but they tell us that babies have it much easier than older kids or adults...which is not to say that it won't be hard, but it could always be worse.

Tuesday, February 1, 2011

We're getting back into the swing of things. Chris went back to work today for the first time in 6 weeks. Scarlett is napping in her bassinet. I have showered, eaten and done some dishes. I even got Scarlett to nurse for a little while this morning. It's like nothing ever happened...

Yesterday was supposed to be my first day back to work after maternity leave. I can't believe how much has happened since I last worked. I took two weeks off before Scarlett was born; my last day was the day my sister delivered Zoey. She was due to be born this week. Thank goodness for my substitute teacher and my wonderful teaching team; my class is doing well and making good progress without me.

Our neuro-oncology appointment was rescheduled, so we go to see them tomorrow. After this appointment, we should have a plan for how to proceed with chemo in the next few weeks. Then Thursday, we revisit the neurosurgery team for another quick MRI and a follow-up. They keep calling to check on us, waiting to hear that Scarlett is struggling, hearing every time that she is doing well. Hopefully, this MRI still shows no need for a shunt.

We also get to downgrade Scarlett's medicine today. Now she takes anti-seizure meds twice a day and a steroid just once a day. The steroid will wean off in the next week, but she will likely be on some kind of anti-seizure medication for a long time. She's learning to take the medication more easily, even though it still makes her gag sometimes. Poor baby!